Frequently Asked Questions

Where do studies take place?

Studies are conducted all over the United States. Some projects will ask that you visit a university campus; others may involve visits to your home; and others may require completing questionnaires mailed to your home or answering questions over the telephone.

If I am already enrolled in another research registry should I join this one?

Yes. The goal of a collaborative national registry is to have one centralized database to connect all individuals, families and researchers in the U.S. Our objective is to avoid duplication of efforts to recruit participants and to prevent having an overlap of the same participants who are in the same studies at various research centers.

Will we be removed from the Registry if we do not participate in any studies?

No. The Registry just contacts you about studies you are eligible for—it doesn’t matter if you participate in them or not.

Do you need genetic test results or other medical records to enroll in the Registry?

We need to have documentation from your health care professional to verify that you or your child has the gene that causes fragile X syndrome or fragile X-associated disorders.

How will I learn about the results of a study that myself or a family member participated in?

Once the study has been completed, you will receive a summary of findings for each study in which you participated.

How do I withdraw from the Registry?

You may withdraw from the Registry at any time by contacting the Registry staff. See our contact section of this web site.

What information goes into the Registry?

Basic contact information about you, your child and family will be recorded. A section of the enrollment process has a questionnaire that asks basic demographic information such as your race and ethnicity. In addition, we ask questions about genetic diagnosis and conditions that might affect participation in a study.

What kinds of studies will recruit through the Registry?

Examples of recent and current studies have focused on understanding the language challenges of children with fragile X syndrome; the ways in which families are affected by , and adapt to, having a child with the syndrome; the effectiveness of specific medications in treating fragile X syndrome; and the ways in which certain types of social activities are processed in the brains of children and adults with fragile X syndrome. Some projects may ask to draw a sample of blood, some may involve completion of standardized tests, and some may involve having an MRI.